How to Fix a Hole in the Heart

The doctor turned to face us. He was a tall man, athletic and thin, put-together and with a quiet, intellectual air. He wasn’t what you’d call handsome, but he carried himself well and had a lot of things going for him: crisp posture, trousers neatly creased, expensive loafers. He even smelled nice, which is hard to do in a hospital. Removing a pair of rimless glasses and slipping them into the breast pocket of his lab coat, he eased himself onto a stand-up stool. The digital light of the ultrasound machine reflected off his bald head.

“First of all,” he said, leaning forward slightly and leveling us with his eyes, “mmm, congratulations, no?”

I glanced down at my wife, Ursula, who was lying half exposed on a reclining hospital table. We were deep in the bowels of a large hospital on the Upper East Side of Manhattan. Ursula was wiping medical jelly off her stomach with a paper towel. She looked so pretty and vulnerable. Five years earlier I hadn’t known her at all. Now we were a family.

“Thank you,” Ursula said, forcing a smile. She was exhausted. You have heard all your life that a human baby takes nine months to grow, but gestation actually takes forty weeks, which isn’t nine months but ten. If you add in the two months (at least) of sleepless recovery following delivery, a woman spends no less than an entire year in moderate to severe physical discomfort every time she has a baby.

That’s leaving aside the emotional discomfort, and Ursula was in the thick of that. This would be our second child, and a few weeks earlier we had received a difficult diagnosis. Some things in a marriage you can predict; Down syndrome you can’t. We were off-balance.

“I want to tell you that you’ve got, mmm, a healthy baby girl here,” said the doctor. “That’s the main thing. Good news, no?”

His accent was Mediterranean, possibly Italian. I took the liberty of filling in some biographical details. His presence in this wing of this hospital in this neighborhood in this city probably meant he was a physician at the top of his profession. He was almost certainly wealthy, or on his way. He’d gone to elite schools and excelled in his studies. He’d been blessed with talent and opportunity and made the best of both. I surmised that he’d done well at everything at every stage of his professional ascent: exams, internships, fellowships, residencies, faculty committees, interviews, surgeries, consultations, publications. His job and his bearing, not to mention his shoes and his cologne, combined to make him seem like a winner in the lottery of life.

In short, he was perfect.

“Yes, that’s good news,” said Ursula.

The doctor’s speciality was pediatric cardiology—baby hearts. Most babies don’t need that kind of care, but here’s a little-known fact, of which I was ignorant before I was required to know it: Babies with Down syndrome are often born with holes in the walls separating the chambers of their hearts. The doctor was briefing us.

“The defect occurs in about, mmm, 50 percent of babies with Down syndrome. That’s much higher than for typical infants. In many cases the perforation will close spontaneously on its own. But if it doesn’t, this will cause the blood that flows from the heart to the rest of the body to not be controlled in the good way, mmm, the proper way.”

He was holding his cupped hands together, one over the other. God had blessed those hands with the ability to perform tiny medical miracles, to make right what has been unexpectedly, inexplicably, completely unfairly made wrong. When he said the part about the blood flowing out from the heart he separated his thumb and forefinger to make a small peephole, the way you might if you were squirting water through your hands in a bathtub for a child.

“I think that in this case, mmm, based on what I’ve seen here”—he gestured toward the ultrasound machine—“I’d say that chances of a spontaneous closure are, mmm, really quite high. The hole is very small actually.”

“That’s such a relief,” said Ursula.

“Yes I agree,” he said. “It is a tremendous relief. I have successfully treated this defect many times but all things being equal, mmm, we don’t want to see it. We have been very lucky here, no?”

An uptown train rumbled beneath us. There are some places in New York where the sound of subway cars is always in the background, rollicking up from sidewalk ventilation grilles and in through open windows. You hear it and feel it. Clickety clack, clackety click. I always take that sound as a reminder that life thunders on. No matter how dramatic or consequential your day has been, no matter what terrible news you’ve received, millions of other people are just going to work, reminding themselves to pick up their dry cleaning on the way home.

Tragedy is mundane; death is quotidian; fear is part of the grind. Clickety clack, clackety click. The subway sound vibrated through the bones of the building, a brand-name medical facility attracting top-notch physicians from around the world. Doctors came to this hospital to practice difficult medicine under unusual circumstances.

Even without a hole in the heart, our circumstances were unusual. Ursula and I had jumped for joy a few months earlier at the news that our family would soon expand—the baby girl would be born, as her older sister had been, right here in this hospital. Now we were grappling with a terrifying and mysterious diagnosis of a genetic abnormality we didn’t really understand. It was good news that our baby would not need to have her chest cut open and her heart sewn up moments after taking her first breath, but that didn’t change the main thing: The syndrome wasn’t going away.

The doctor adjusted his glasses and cleared his throat as he looked at what I assumed was Ursula’s medical chart. It could have been the baby’s chart. For all I knew they were the same.

Ursula was still smiling. She liked him, I could tell. Jealousy welled up in me like heartburn. It was irrational, I knew that. My anxiety had emerged as a ratchet on my instinct to protect my wife. Funny how a person can go from a stranger you might pass on the street to the most important thing in your life in the span of a few years.

Did the Italian doctor know anything about that kind of love? I had reason to suspect him. We had recently met with another doctor in a similar windowless room in this same hospital. He was an older man, a gruff Middle Easterner with thick forearms who was head of prenatal and maternal medicine for the whole hospital. His presence had a detectable shrinking effect on the nurses and technicians in the office. I’ve had many bad bosses. I’ve seen just how drunk some people can get on small amounts of power. This guy was slurping from the deep end of the ego tank. Speaking only to Ursula, he began our meeting by confirming the diagnosis.

“What I see on the scan is craniofacial developments with regard to the maxillary and nasal features, reduced anteroposterior skull length and a widened biparietal diameter—the medical term is brachycephaly, basically, a shortened head measured from back to front—and atypical development of the long bones at this stage of pregnancy. All of this is consistent, of course, with Trisomy 21.”

“Excuse me, what do you mean by ‘long bones’?” I asked. As the father of the creature he was describing I figured I had some right to pose questions. He paused. Then looked at me without moving his head.

“You have bones in your arm,” he said in a monotone, touching the forefinger of his right hand to his left shoulder and dragging it down the length of his arm to the elbow. “Humerus.” From the elbow he continued to the wrist. “Radius, ulna. These are long bones.”

Oh.

“You have bones in your legs,” he continued, pointing with both hands at his hips, then his knees, then his feet. “Femur, tibia, fibula. Long bones.”

He shifted his eyes back to Ursula, crossed his gray-haired arms on his barrel chest, and proceeded to explain that in 2005 New York state law allowed abortion only up to the twenty-fourth week of pregnancy. After that, he said, we couldn’t have the procedure here, at this hospital. We’d have to go to another state. If that’s what we wanted to do, he would help us.

“We can figure something out,” he said to Ursula alone.

That fellow didn’t earn our trust, and the memory of his arrogance followed us into this meeting with the (possibly) Italian doctor like a cold shadow. In my grief and confusion I was developing a sense that we needed to be on guard with these people. Their expertise had done something awful to them. All the years of study and sacrifice had turned them into medical automata, precision-guided solution-providers who couldn’t help but broadcast that they had better things to do and more important places to be. They were technicians, for the most part, coneheads without compassion. Some of them were actually wolves in white coats.

The possibly Italian doctor settled back onto his stool and pressed the button to turn off the screen on the ultrasound. For a quick minute I allowed myself to wallow in my resentment. Then a small thought entered my mind. It sat quiet for a moment. It sat still. Then, like food coloring, it began to spread. My irrationality started to clear and it dawned on me what he’d said.

“Mmm, congratulations.”

A train rumbled somewhere deep below.

Congratulations. We hadn’t heard much of that. Ursula’s baby doctor hadn’t said it when she called to give us the diagnosis. She gave us sympathy and concern, but not congratulations. Our pediatrician hadn’t said it when Ursula called for advice. He’d given us another family’s phone number and assurances that things would be okay. He hadn’t offered congratulations. When we told our family and friends about the diagnosis, the reactions had been funereal. There was hesitancy and confusion followed by head-hanging and shoulder-squeezes. Someone very close to me had uttered the unutterable: “Consider your options.”

Now, from the possibly Italian doctor: Congratulations. I was so wrapped up in our medical odyssey and my own psychodramas that I hadn’t paused to consider the miracle of the new life that was growing slowly over ten months in Ursula’s belly. And that baby was healthy. He said so. When you get a diagnosis like Down syndrome you figure it means the opposite: Your baby is sick, broken, full of holes. We didn’t expect a clean bill of health. We hadn’t counted on being congratulated.

The possibly Italian doctor stood and smiled. He flicked on the overhead lights, raised his arm, and gestured us toward the door. I put my arm on Ursula’s back as we exited into the hallway. The doctor followed us, handing Ursula’s folder to the nurse behind the counter.

“I’m looking forward to meeting this healthy little girl,” he said, turning to bid us farewell. “I will come see her for an examination, mmm, hopefully right after delivery.”

He reached out his hand to Ursula.

“Thank you, doctor,” she said. “We’re so grateful for your time and patience with us. And especially your optimism. It means a lot.”

“You’re welcome, no?”

He reached out his hand to me, smiling. As he did I caught a glimpse of his teeth. Yellow. Not perfect at all.

Matthew Hennessey is deputy op-ed editor at the Wall Street Journal.

Image by Mart Production, public domain. Image cropped.